So what is really going on?

[faith]

Okay. I'm going to throw a few things out here. All of these things are going to be jumbled together, so I apologize.

 

You say you remember he had strep once. What age? Were the tics present before strep? If so, about how long?

I only have one documented strep case at age 7 (he is now 10 1/2. he came home from school on a Friday with this terrific eye rolling tic. we went to a b'day party at someones house and he was pretty unruly, couldn't get him to listen to me, he was ramming a big wheel bike into other kids. wild. he said he had a sore throat on the way home and the doc said it was strep (altho I might add with no swab as it was visibly obvious) we got amoxy and I did feel that after a couple days the tic and behavior ceased. this put me on the PANDAS path, but he subsequently had no high titers so that was that. Also, I was leary of continued abx, so upon my own research in inquiry, I felt I should leave well enough alone. After that, he still had tics here and there, with some waxing and waning, but definitely at a more mild level than in the past year. I can't say anything ever went away, there was always something, so it wasn't a dramatic episode, so to speak.

 

Also, yes, he did have tics before this, and had since he was 3 1/2. the other behaviors of sep anxiety and ocd tendencies were definitely there, altho I did not really zero in on them as symptoms at the time, I was always fixated on the tics.

This is just a fyi, in case you are also looking for the devil's advocate in diagnosing TS instead of PANDAS. The psychiatrist told me that with clinical, classic OCD, even when the brain heats up a little, the OCD increases for the time being. So, if it was TS, it may be the same.A worsening after the illness that had a temp increase

.

 

not clear on this. but if you mean the ocd kicked up with the tic, do you mean just in general as in TS, or because of the viral illness?

 

How long after being ill, do you see an increase in anything that would be considered "PANDAS-like"?

 

I can't say any of his issues are 'episodic', they just seem to wax and wane, always kind of there. This is the first time since looking at PANDAS now that he got sick, so before this, I only knew he was quiet on tics while the 24 hour bug was there, and eventually the tics returned. maybe before, I would think things were okay, and then after a time, I'd be like "oh he was doing so good, what happened?", so perhaps this was sometime after the illness, where the antibodies kind of all got in line and now slowly mounted their attack? don't know.

 

As for the sore throat vs no +strep. Well, that can happen. People can have sore throats w/o it being strep. Now, my doctor (not my child's ped) once gave me a strep test and everything came back negative. He said he was convinced it was strep and gave me meds anyway. So, I don't know about the clean cut "if the test comes back negative, it's definitely not strep" theory.

 

Have you cleared him of strep in other places?

I have not, and I don't think any doctor I've dealt with would do this, I don't know how to go about this.

 

is the cousin feeling? Did theyHow ever take him to the dr?

 

I think I heard he was still kind of icky on Christmas day, and they did get him to the doctor who gave some other antibiotics (I think my mom said the abx they first gave him were some they had in the house). I have not asked my cousin if it was strep. I'm lying low because that night, my son swung on a basement banister and broke the spindle pole and my cousin went off on him...... ..... I will ask tho, as I wonder too if it was strep.

 

Okay. I think that's enough questions

.

 

I'm usually the one asking them......[/b]

 

I'm not convinced that tics and ocd plus are not symptoms of autoimune in some way, but I'd sure like to know the pathology. I do recall posing this question to Dr. L. and she did say, well, it could just be that they had strep the one time (in other words 'first') and then subsequently, other illness could cause problems. I get that, but still want to know why and what to do about it. I also asked what the antibioitcs will do, and she said "basically to keep strep away"......so that's why I'm wondering about us non-streppers. if its something else, can we treat it with something else? or is illness going to happen and there's no way to get around it? is there a microbe in there that needs to be eradicated just the same as strep? .....

 

Faith

[thereishope]

Boy, I wish I could find this, but I think someone once said that when the immune system kicks in (even if it's not strep), those bad strep antibodies are still released in a lower form. That's why we see exacerbations with other illness. But I may be totally quoting that wrong. I'm sure someone will correct me if I am totally off base. I really need to keep track of the quotes that interest me.

 

Isn't 3 1/2 young for TS to surface? But it wouldn't be too young for PANDAS.

 

I do know of 2 people in which the child's original trigger was a staph infection, not strep. So, there is a possibility that your child's original trigger could have been something else besides strep too.

[sf_mom]

Faith, Have you done any immunological testing on your son recently... through Dr. T or Dr. L? I'd be curious as to what those tell you... It might be helpful in determining if he is able to fight anything off at this point.

 

As you know, I've been posting tirelessly on the fact that there could be a reservoir of strep anywhere in his body and if it was specifically the S. Pyogenes strain inclusive of the M protein strains, he may not have positive throat cultures, raised ASO or Anti-DNAse-B titers. Those particular strains do not produce the same immune response typical of most other strains. So, don't give up on it not being strep.

 

From everything you have said, it appears your son is very sick. Unfortunately, PANDAS treatment is ahead of the supportive science and may just take a leap of 'FAITH' on your part to make him well.

 

-Wendy

[dabel]

Faith,

 

My son has what would be considered a severe case as far as PANDAS goes. He has never had strep throat that I know of. He had an itchy butt at 5 and that is when we found strep. It took another seven years of ###### before we finally got the PANDAS diagnosis. A couple of months ago I had his titers checked on a whim....ASO 400 and Dnase B 1590 (under 170 is normal). He did not have one symptom of strep at all! I guess what I am saying is that the throat gets a lot of attention because it is easy to check but you can have the same bug, opposite end and have problems. I also want to say that Aaron had IVIG with Dr.K Dec. 3rd and 4th and is steadily improving!!! Hang in there...you will get to the bottom of it....maybe literally!

 

DeAnn

[smartyjones]

faith - my son is quite a bit younger(5) - presents with obnoxious behaviors - if you didn't know, you'd just think he was a hellion, not that anything was medically wrong with him except an extremely bad attitude and bad manners.

 

we went to a b'day party at someones house and he was pretty unruly, couldn't get him to listen to me, he was ramming a big wheel bike into other kids. wild

i could have written this myself! that exact behavior is something he does that is indicative of an exacerbation. otherwise, he is quite a nice boy, not aggressive. so strange, b/c with his exacerbation last spring after he got off first treatment with keflex, we were at a party and he was running over the little kids with a bike! i've seen that enough with him that i consider that one of our red flags of pandas behavior.

 

off on a wild note - there was a post recently about someone who gave her daughter tamiflu 5 months after she thought she'd had the flu and saw good results with pandas behaviors. my son had the flu about a month ago and had an exacerbation. he'd been doing pretty well but remaining potty talk that's part of pandas exacerbations with him. i had given him oscillococcium for the flu and gave it to him again based on that post. so bizarre - could have just been coincidental - he stopped the potty talk. how'd you treat his sickness? was it flu?

[faith]

Faith, Have you done any immunological testing on your son recently... through Dr. T or Dr. L? I'd be curious as to what those tell you... It might be helpful in determining if he is able to fight anything off at this point.

 

As you know, I've been posting tirelessly on the fact that there could be a reservoir of strep anywhere in his body and if it was specifically the S. Pyogenes strain inclusive of the M protein strains, he may not have positive throat cultures, raised ASO or Anti-DNAse-B titers. Those particular strains do not produce the same immune response typical of most other strains. So, don't give up on it not being strep.

 

From everything you have said, it appears your son is very sick. Unfortunately, PANDAS treatment is ahead of the supportive science and may just take a leap of 'FAITH' on your part to make him well.

 

-Wendy

 

I really like what you are getting at here, this is good info and makes sense. but is this definite or a coud be? why don't doctors or anyone propose this such thing. If there could be strep elsewhere, why doesn't anyone propose to look for it? I know some have said they found it elsewhere, but was it group A, and if not, then it will be said that group B is not the culprit so it doesn't matter. I know WE think this is all a good possibility, but can't anyone out there prove this might be right? If strep could be elsewhere, why hasn't the PANDAS docs just done these tests on the kids they've seen that are not showing obvious strep, if they are a simple thing. Dr. L. didn't suggest that, nor Dr. T. If they are the docs treating this, they'd be the best ones to go find it, no? even if we were to find strep below, would it be group A? I'm thinking it would be group B, and supposedly that doesn't mount an antibody response, does it? again, don't know? owwwww....

 

I havn't done any immuno work. Since my son doesn't really get sick often at all, I mean he really doesn't except for these 24 hour virus about once a year, so my feeling is that he's a good fighter of illness, no? does it work like that?

[dut]

Yes, you can absolutely get Group A strep on the bottom.. perianal strep. It can hide out in the anal tract too. You can also get it on the skin elsewhere. When our ped last swabbed our kids she did their bottoms, noses and throats.......

[thereishope]

Well, Faith, you think he doesn't get sick. I know you read this forum a lot. So many PANDAS kids react odd to being ill, or I should say they don't react as a doctor assumes they should. Example, a lot don't get symptoms of strep. If not for PANDAS, many parents would have never entered a ped's office for a strep test. I've read posts about kids who went for allergy testing and the parents find out the child is highly allergic to things like pets. They own pets and the child never exhibiting the "normal" allergic response. When it comes to other ailments, it seems PANDAS kids react different than expected. When my son croup, he never even had a cough. I took him because his voice was high pitch for a week. Also, to my knowledge, prior to 5 years old, all I can recall my son having is maybe 2 ear infections and that single incidence with croup. So don't let lack of recurring illness or you not knowing about illness deter you from looking into PANDAS further. You've come this far, don't give up.

 

Also, for other's reading dut's post, a child can also get strep on their skin which may look like a rash or blisters and girl's can get vaginal strep. At least, I don't have the vaginal strep to worry about w/ a boy!

[faith]

faith - my son is quite a bit younger(5) - presents with obnoxious behaviors - if you didn't know, you'd just think he was a hellion, not that anything was medically wrong with him except an extremely bad attitude and bad manners.

 

we went to a b'day party at someones house and he was pretty unruly, couldn't get him to listen to me, he was ramming a big wheel bike into other kids. wild

i could have written this myself! that exact behavior is something he does that is indicative of an exacerbation. otherwise, he is quite a nice boy, not aggressive. so strange, b/c with his exacerbation last spring after he got off first treatment with keflex, we were at a party and he was running over the little kids with a bike! i've seen that enough with him that i consider that one of our red flags of pandas behavior.

 

off on a wild note - there was a post recently about someone who gave her daughter tamiflu 5 months after she thought she'd had the flu and saw good results with pandas behaviors. my son had the flu about a month ago and had an exacerbation. he'd been doing pretty well but remaining potty talk that's part of pandas exacerbations with him. i had given him oscillococcium for the flu and gave it to him again based on that post. so bizarre - could have just been coincidental - he stopped the potty talk. how'd you treat his sickness? was it flu?

 

 

no, not the flu, just sore throat (negative to strep) and fever of 100-101. I didn't give anything but advil last night because he complained it hurt when he swallowed. no abx at this time.

 

and yes, what I described at the birthday party seemed a definite 'episode', I always thought so (this was more than three years ago). however, I cannot attest to anything similar happening after that time. (to remind, we never had another strep that I know of after that either....and I have had him tested several times, even just to satisfy my curiosity during times when he waxed on tics, or when I thought his throat looked red. it was never positve. so putting together an episode with a strep illness wasn't possible, and as I've said, when he has the virus, he is actually quiet on tics (whereas with that strep episode, he was not, the symptoms were while he was sick). so my theory is that with viral, the increase of symptoms comes a little later. maybe the same as what happens with the vaccines, some have seemed to get a vamping up of symptoms AFTER the vaccine is administered, sometimes months later.

 

Very interesting about the tamiflu and oscillo stuff, that is exactly what I'm wondering. if there is something there that needs to be kicked in the butt....my thought was trying olive leaf, since its supposed to be anti-viral. If you could expand on any of that, I'd be very interested.

[peglem]

And, if your child does not mount a vigorous immune response- you may not "see" illness at all. Most symptoms of illness-what you see, is caused by the immune response.

[faith]

Yes, you can absolutely get Group A strep on the bottom.. perianal strep. It can hide out in the anal tract too. You can also get it on the skin elsewhere. When our ped last swabbed our kids she did their bottoms, noses and throats.......

 

dut,

did your child have 'symptoms' of that? is that why she did that? how did you manage to get that done? ......I could just see my docs face when I ask for that one....

[faith]

Well, Faith, you think he doesn't get sick. I know you read this forum a lot. So many PANDAS kids react odd to being ill, or I should say they don't react as a doctor assumes they should. Example, a lot don't get symptoms of strep. If not for PANDAS, many parents would have never entered a ped's office for a strep test. I've read posts about kids who went for allergy testing and the parents find out the child is highly allergic to things like pets. They own pets and the child never exhibiting the "normal" allergic response. When it comes to other ailments, it seems PANDAS kids react different than expected. When my son croup, he never even had a cough. I took him because his voice was high pitch for a week. Also, to my knowledge, prior to 5 years old, all I can recall my son having is maybe 2 ear infections and that single incidence with croup. So don't let lack of recurring illness or you not knowing about illness deter you from looking into PANDAS further. You've come this far, don't give up.

 

Also, for other's reading dut's post, a child can also get strep on their skin which may look like a rash or blisters and girl's can get vaginal strep. At least, I don't have the vaginal strep to worry about w/ a boy!

 

good points, and I guess I have no problem looking for these things, I've been looking for years, but regular doctors will just tell me there's nothing wrong with him. For instance, my son is kind of underweight for his age, yet our ped has no problems with this, he says, he's healthy and he'd rather see him skinny than overweight. With no obvious symptoms, we are all left running in circles chasing our tails. I guess I kind of feel like a jerk asking for tests when my son shows no symptoms of being sick. I've had alot of blood tests at my request, hoping to find something out of sorts, but he shows healthy.

[faith]

And, if your child does not mount a vigorous immune response- you may not "see" illness at all. Most symptoms of illness-what you see, is caused by the immune response.

 

 

peg, could you elaborate? are you saying that if the immune response is not adequate, that they could have some illness or even disease, but not show it?

[sf_mom]

Oh as my father-in-law said....... strep could be any where, soft tissue, lungs, blood, etc. It would almost be impossible to test and lucky to find it if you did.

 

Anyway, even though your son doesn't APPEAR to be ill other than TICS/OCD/ANXIETY which are all known symptoms of SC and RF. I would still test his IgG Subclasses, Strep Antibody Titers, CBC panel to see if he's 'FIGHTING' something.

 

-Wendy

 

Faith, Have you done any immunological testing on your son recently... through Dr. T or Dr. L? I'd be curious as to what those tell you... It might be helpful in determining if he is able to fight anything off at this point.

 

As you know, I've been posting tirelessly on the fact that there could be a reservoir of strep anywhere in his body and if it was specifically the S. Pyogenes strain inclusive of the M protein strains, he may not have positive throat cultures, raised ASO or Anti-DNAse-B titers. Those particular strains do not produce the same immune response typical of most other strains. So, don't give up on it not being strep.

 

From everything you have said, it appears your son is very sick. Unfortunately, PANDAS treatment is ahead of the supportive science and may just take a leap of 'FAITH' on your part to make him well.

 

-Wendy

 

I really like what you are getting at here, this is good info and makes sense. but is this definite or a coud be? why don't doctors or anyone propose this such thing. If there could be strep elsewhere, why doesn't anyone propose to look for it? I know some have said they found it elsewhere, but was it group A, and if not, then it will be said that group B is not the culprit so it doesn't matter. I know WE think this is all a good possibility, but can't anyone out there prove this might be right? If strep could be elsewhere, why hasn't the PANDAS docs just done these tests on the kids they've seen that are not showing obvious strep, if they are a simple thing. Dr. L. didn't suggest that, nor Dr. T. If they are the docs treating this, they'd be the best ones to go find it, no? even if we were to find strep below, would it be group A? I'm thinking it would be group B, and supposedly that doesn't mount an antibody response, does it? again, don't know? owwwww....

 

I havn't done any immuno work. Since my son doesn't really get sick often at all, I mean he really doesn't except for these 24 hour virus about once a year, so my feeling is that he's a good fighter of illness, no? does it work like that?

[thereishope]

I just wanted to add that my son has had a flare up happen post viral illness. When he had H1N1, it didn't happen until 3 days post fever. That surprised me because prior to that, I saw flare up during viruses. Just goes to show that when you think you have it figured out, something changes.

 

I've also read others who have commented on their child being seemingly "normal' during the virus.